Surrounded by People, Yet All Alone

I love my son with special needs more than words can say. Having him in our life has brought more blessings and love and beauty than I ever could have imagined. But some days are hard. And sometimes you just need to embrace the fact that even though this journey can be unfathomably beautiful, it can also be incredibly hard and incredibly lonely. This post is dedicated to the warrior moms who are surrounded by people, yet sometimes feel all alone.

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Being a parent of a child with special needs can be extremely isolating. The things we think about, worry about, and deal with on a daily basis, just seem so far removed from the typical track. It feels hard to relate to a typical parent’s experiences, and for them to even begin to relate to us. Friends seem to scatter, and relationships fade under the weight of full-time care giving. Sociality gives way to simply surviving.

Add to the emotional isolation, the physical isolation from the extra challenges just to leave the house, and we can sometimes feel pretty lonely. Lack of qualified childcare, mobility challenges, behavioral problems, and the weight of a child we never imagined we’d still be needing to carry, keep us homebound for longer than we’d like. When we do finally emerge, battle scarred and worn, you’d think it’d be liberating to finally meet the outside world again. And sometimes it is. But sometimes it can have the opposite effect, serving to further fuel our overall sense of isolation.

Ironically, the park with all it’s fun and sociality, can be one of the loneliest destinations. Lots of people to exchange pleasantries with, but we don’t. Or rather, we can’t. While you sit on your bench chatting, unable to fully appreciate what comes so naturally to your children who can climb effortlessly, and need shockingly little supervision, I am drenched in my own sweat trying to be the body that my child doesn’t have. I am on high alert, in a kind of perpetual fight or flight mode, that is required to keep him safe from his mobility challenges, his own impulsivity, and lack of sense of danger. And it’s exhausting. While I lift and twist till my back aches, I feel a twinge of envy for how easy your park trip is, and that you have come with friends no less. We don’t often come with friends; we don’t have many, and with the complicated nature of our erratic lives, playdates often feel like an impossibility. Unknown and unfamiliar with our challenges, people don’t bother to invite us much anyway.

But I hear you chatting so enviously carefree on your playdates. I hear you talking about how awful your child’s one-year immunizations were, and I wonder if you have any idea what regular blood draws, constant medical procedures, and hospitalizations are like. If you have ever even heard of an IEP or home health, or if your child has ever been seen by a cardiologist, gastroenterologist, or occupational therapist (or all three).

I see your 18-month old doing things that my five-year old cant. And with ease. It doesn’t seem fair. We work so hard every single day, fighting for every tiny milestone that your child seems predisposed to master without a single thought or intervention. Some of your worries feel insignificant to me, in the scheme of what we are dealing with. And I feel guilty for pangs of misplaced resentment over your easy successes. I cringe when I hear you tell your child to be quiet, and I wish you knew to be grateful for the incessant chatter that my heart so desperately longs to hear.

Children and adults alike, will stare at us while we’re at the park. At my child and at our struggles. I can see pity in people’s eyes, and sometimes judgement for how I handle my son’s behaviors, without ever having walked a minute in our far-more-complex-than-you-can-ever-appreciate-shoes. Well-meaning kids will ask, “What’s wrong with him?” Or, “Why doesn’t he talk?” And I feel sad. Occasionally I will overhear someone tell a story that is dotted with the searing word “retarded,” somewhere in the punchline. And suddenly my heart will hurt worse than my back. My son will try to keep up with yours as they run around, because just like your kids, all he wants is a friend. But he can’t keep up. His body won’t let him. And your kids won’t notice or take time to slow down to include him. Sometimes your kids will even hide from him, or laugh before running off, as if ditching him is some hilarious game.

And then I will leave the park, feeling somehow more lonely than when I came. Feeling somehow surrounded by people, and yet all alone.

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The loneliness of special needs parenting is real. But it does fade some over time. Or maybe it isn’t that the loneliness changes, but you do. You come to realize that the journey you are on is so much bigger than park dates and social circles and the validation of others. It’s about an amazing child who needs you. And turns out, you need him too. The journey is so much richer and deeper than you thought, full of beauty and miracles and kindness that most people will never know. And with sights so breath taking, and highs so high, you can hardly put words to it, only tears. You realize that park dates will come and go, but love never fails. And that the perfectly imperfect life, and the perfectly imperfect child that you have, is all you ever needed.  No, my son, you don’t make life harder. You make it better. You make me better. You, in all your unassuming wonder, were the best gift I ever got. And it is an honor and privilege to be your mother. Together, we are never alone. ©

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2 thoughts on “Surrounded by People, Yet All Alone

  1. So incredibly true. This touched me. After raising three bio kids and now we are raising an adopted Down Syndrome child, I never imagined how lonely the journey could be. The park is especially true.

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  2. You expressed this so accurately, and clearly. My children are grown now, but reading this took me back to some very lonely, dark times. I don’t fault the people who don’t “get it.” I’m sure I didn’t “get it” until I was doing it. I remember going to the park, and feeling exactly as you describe.
    What you say here is also true: “the loneliness of special needs parenting fades over time.” But even more true is that YOU do change too. Raising my daughter (who has down syndrome) and my son (who has complex medical needs) and two other boys…these circumstances changed me. I like to think it has been for the better. I am more confident, more sure of myself and more determined. I also learned that other people don’t have to understand my circumstances or cater to them. But the flip side of that is…I don’t have to understand or cater to theirs, either. If they are uncomfortable or ignorant, or unaccpeting…that is not for me to change, fix or make better. Knowing this gave me a freedom I’m sure I wouldn’t have had if I wasn’t the parent of children with special needs.

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